1
An All Age Disability Service for Kirklees
Clare Costello February 2016
Healthwatch Kirklees
Unit 11/12 Empire House
Wakefield Old Road
Dewsbury
WF12 8DJ
Tel: 01924 450379
Email: [email protected]
2
Contents Contents ................................................................................................................................................................ 2
Executive Summary ............................................................................................................................................. 3
1. Introduction ..................................................................................................................................................... 4
2. Why are we focussing on this? ...................................................................................................................... 5
3. What we did to gather opinion ..................................................................................................................... 5
4. Results ............................................................................................................................................................... 7
5. Limitations of the study ............................................................................................................................... 38
3
Executive Summary
Kirklees Council are considering developing an All Age Disability Service (a working
title). The aim would be to reshape teams that currently work with children and
adults with a disability to become an all age disability service – one that maximises
the independence of children and young people in preparation for adult life and
enables a seamless experience for disabled users in Kirklees.
Healthwatch Kirklees have discussed this idea with people with a disability and their
parents/carers and the following themes emerged:
People feel almost all the care, support and services mentioned in the
engagement process are important to them.
Some people feel that having an integrated, All Age Disability Service in
Kirklees will be a positive step which should alleviate difficulties at times
such as transition from children’s to adult’s disability services.
There is some concern about the idea of having an All Age Disability Service;
some people feel the integration of services is a cost cutting exercise and are
fearful of either adult’s services or children and young people’s services losing
funding
People want to have a very clear idea of how an All Age Disability Service
would impact them – what will change, what will stay the same, what will
there be less/more of?
Many people value the support they access at community-based settings, but
some spoke more negatively about the help and advice they have received
from statutory organisations.
People would like good quality support which is accessible to all and is flexible
and responsive to the needs of people with a disability and their
parents/carers.
4
1. Introduction Kirklees Council are changing the way they work and over the next 3 years they
describe becoming a New Council which will focus on people’s health and wellbeing,
economic resilience and strengthening early intervention and prevention. With this
approach, the council aims to support families sooner, prevent problems arising and
reduce the demand for more costly support at a later date.
The council’s intention is to:
• Support communities to do more for themselves
• Keep vulnerable people safe and in control of their lives
• Focus on the things only the council can do.
As part of the council’s changes, they are looking at their approach to supporting
people with disabilities – both children/young people and adults.
At the moment the council has separate disability services for children/young people
and adults. They are now exploring the opportunity of creating an integrated
disability service which will bring those services together to form an ‘All Age
Disability Service’ (working title). The council envisage that having such a service
will bring consistency, clarity and ultimately better quality services and support for
people with a disability living in Kirklees.
The idea of an All Age Disability Service is about more than the savings which the
council needs to make, they believe it’s about doing things radically different to
ensure that people who need help and support get the best quality care, information
and advice available not only from the council but the partners they work with both
in the public, independent sector and the community.
The council envisage that An All Age Disability Service would fit with their
programme of Early Intervention and Prevention (EIP) which is about reducing
demand, preventing family breakdown and maximising independence. The aim of
EIP is to:
address problems at the earliest opportunity before they escalate
work in partnership to improve outcomes for everyone, and
help more people in the most appropriate way with the limited amount of
money we have available to us.
5
Kirklees Council’s ideas for an All Age Disability Service mirrors lots of thinking which
is being done up and down the country – it builds upon innovations which have
already been made by some and they endeavour to make the most of the
opportunities already out there. Staffordshire County Council, Coventry City
Council, Wolverhampton City Council, Manchester City Council, Doncaster
Metropolitan Borough Council and Gloucestershire County Council. The councils
mentioned are at varying stages of their journey in the direction of having an All Age
Disability Service, for example Staffordshire County Council have created their
'Living My Life, My Way' commissioning strategy which outlines their vision, ambitions
and commissioning priorities for disabled people. Coventry City Council already
have their All Age Disability Service up and running. Kirklees Council are looking at
developing a similar service to those which exist in other areas.
2. Why are we focussing on this?
In November 2015, Kirklees Council asked Healthwatch Kirklees to undertake a piece
of engagement in relation to an All Age Disability Service - to speak to people with
a disability and their carers with the aim of gathering feedback on what people think
to this idea; asking what is important to people, what works well and what needs to
be improved.
Healthwatch Kirklees have a statutory role to ensure people are involved and have
their opinions represented when service redesign is being considered.
3. What we did to gather opinion
Pre-engagement
Some pre-engagement documents have been reviewed, themed and taken into
consideration as part of this engagement. The documents which have been looked
at are:
General Inclusive Sport and Physical Activity Consultation – West Yorkshire
Sport November/December 2013
Carers Consultation Feedback – Kirklees Council October-December 2013
Healthwatch Kirklees’ ‘Welcome to My World: Issues affecting people in
Kirklees who are Deaf and hard of hearing as they interact with health
services’ report – February 2014
Engagement with Parents of Children with Addition Needs
(PCAN) September 2015
Kirklees Council’s Budget Consultation - 26 October – 6 December 2015
6
The themes from this pre-engagement are shown in Appendix 1 and, where relevant, these are referred to in the findings below.
Healthwatch Kirklees engagement
In order to find out what people think about the idea of having an All Age Disability
Service in Kirklees, Healthwatch Kirklees sought feedback in a variety of ways from
people with a range of disabilities and their carers during November and December
2015.
The approaches used were:
An online survey which asked how important various things are to people in
relation to the 8 principles which the council have identified as important to
underpin the formation of an All Age Disability Service:
o Ensuring the best possible start in life for people with a disability.
o Having services and communities which are as inclusive as possible.
o Developing and maintaining people’s independence.
o Enabling everyone to making a contribution to society, where this is
possible.
o Giving people choice and control over their care and support.
o Enabling people to be as healthy as possible.
o Planning for the future, including smooth and seamless transition
between services.
o Having a ‘whole family’, lifelong approach to care and support.
The survey link was distributed widely across Kirklees (Appendix 2). Paper
copies were made available and an easy read survey was available on request.
Opportunity to attend a workshop where group discussion and activities would
generate feedback from people with a disability and their carers. Information
about the workshops was circulated widely and Kirklees Sensory Service also
created a BSL video to promote the workshops to the Deaf community
Staff from Healthwatch Kirklees offered to go along to any disability groups
or to meet individually with people with a disability and carers during
November and December.
Reflecting on the pre-engagement work done by Kirklees Council staff and
other organisations.
Healthwatch Kirklees understand that the council will engage separately with staff
to gather their thoughts on an All Age Disability Service for Kirklees, although the
7
council have already agreed some underpinning principles with the programme team
and partners.
Following on from this engagement, the council will consider the best way to consult
with people about future plans for disability services in Kirklees.
4. Results
The findings outlined below have been taken from:
135 online survey responses
19 easy read survey responses
4 group discussions at Milen Care in Batley (2 with men’s groups and 2 with
women’s groups – total of 64 people engaged.
1 group discussion at Pakistani Association in Huddersfield – total of 9
people engaged.
1 group discussion at an exercise group in Huddersfield for people who are
blind or visually impaired – total of 8 people engaged.
2 groups for Parents of Children with Additional Needs (PCAN) – most people
just completed the surveys but additional feedback was given from 4
people.
1 person from Howland Centre gave feedback in a 1:1 meeting.
Reviewing the pre-engagement work completed by the council and other
organisations with both staff and service users.
A summary of the demographics from the online survey are shown below. A full
breakdown of demographics are shown in Appendix 3.
There were almost the same number of responses from males as from
females.
There were more responses from South Kirklees than from North Kirklees
Most responses were from (or about) people with a disability aged 17 years
or younger (24%)
Most responses were from a white ethnic group (83%)
Most people who responded had a learning disability (61%), communication
disability (43%), mobility disability (36%) or physical disability (35%)
The planned workshops didn't take place as there were not enough people who
expressed an interest in attending, despite the events being widely promoted across
Kirklees. This could have been due to a number of reasons including the time of
year (December), organising care or travel arrangements, and perhaps people who
completed the survey online didn’t feel the need to attend a workshop.
8
The findings are presented according to the 8 headings used in the survey, although
not all comments were taken from survey responses; where comments are from
group discussion this is indicated.
The overwhelming response to the survey questions is that all support and
services are important to people – the difference between the most and least
important themes or services was very small for most questions. However, the
wealth of varied and detailed comments received adds context and clarity to
the responses.
9
We asked 3 specific questions of children and young people with a disability and
parents/carers of children and young people with a disability. 58 people (44%)
responded to these questions which relate to the services, support and care needed
to ensure the best possible start in life.
Ensuring the best possible start in life for people with a disability and
their parents/carers
0
10
20
30
40
50
60
Su
pp
ort
wh
en
wa
itin
g f
or
a d
iag
no
sis
(if
ap
plic
ab
le)
Su
pp
ort
in
be
ing
dia
gn
ose
d (
if a
pp
lica
ble
)
Info
rma
tio
n a
nd
su
pp
ort
fo
llow
ing
dia
gn
osis
(if
ap
plic
ab
le)
Ha
vin
g e
asy a
cce
ss t
o in
form
atio
n a
nd
ad
vic
e
Su
pp
ort
in
th
e c
om
mu
nity (
eg
su
pp
ort
gro
up
s)
Go
od
qu
alit
y,
acce
ssib
le a
nd
in
clu
siv
ech
ildca
re -
fo
r yo
ur
dis
ab
led
ch
ild
Go
od
qu
alit
y,
acce
ssib
le a
nd
in
clu
siv
ech
ildca
re -
fo
r yo
ur
dis
ab
led
ch
ild's
sib
ling
(s)
Issu
es b
ein
g r
eco
gn
ise
d a
nd
re
sp
on
de
d t
oe
arl
y
Su
pp
ort
fro
m o
the
r p
are
nts
of
ch
ildre
n w
ith
ad
isa
bili
ty
Re
sp
on
se
Co
un
t
Children and young people with a disability and their families should have the best possible start in life. Thinking about your own
experience, please rate how important each care/support service is to you or the person your care for
Not at all important
Not very important
Neither important or notimportant
Important
Very important
Don't know/not relevant to me
10
The most important things for people are:
Issues being responded to early
Information and support following diagnosis
Having easy access to information and advice
The things which some people didn’t know about or felt were not relevant to them
were the statements around childcare.
The most important things for people are:
Young people’s activity services – support during school holidays
Young people’s activity services – support on a weekend
Care and support provided in the family home
Some people commented on how difficult they have found it to get their child
diagnosed; very long waiting times, lack of support whilst waiting for an assessment
or diagnosis and then little support once a diagnosis has been made were all things
mentioned by parents and carers of children with a disability.
0
5
10
15
20
25
30
35
40
45
50
Ove
rnig
ht
sh
ort
bre
aks
Yo
un
g p
eo
ple
's a
ctivity
se
rvic
es -
su
pp
ort
aft
er
sch
oo
l
Yo
un
g p
eo
ple
's a
ctivity
se
rvic
es -
su
pp
ort
du
rin
gsch
oo
l h
olid
ays
Yo
un
g p
eo
ple
's a
ctivity
se
rvic
es -
su
pp
ort
on
aw
ee
ke
nd
Ca
re a
nd
su
pp
ort
pro
vid
ed
in t
he
fa
mily
ho
me
Dir
ect
pa
ym
en
ts t
o d
eve
lop
yo
u o
wn
pe
rso
na
lise
d c
are
pa
cka
ge
Re
sp
on
se
Co
un
t
Services for children and young people - thinking about your own experience, please rate how important each care/support service is
to you or the person you care for
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
11
Feedback given from those attending a PCAN support group (pre-engagement,
appendix 1) suggested that some parents felt their concerns about their child’s
health, development or behaviour were not taken seriously and that waiting times
for assessment were far too long.
My child has been waiting for a diagnosis now for over 2 years but in the
meantime support has been minimal…
I have had no support in waiting for or getting a diagnosis
Waiting for assessment is very difficult. They put me on a parenting
programme, increased my medication and didn’t believe me when I said my child
had problems. Lots of parents end up getting depression because it’s such a
difficult process
After diagnosis, I just got a big form to read through and make sense of it
myself.
Most of them [support and services] don’t exist at the moment
We were only able to get a diagnosis within a reasonable timescale by paying
£2500 for a private assessment and diagnosis. The CAMHS waiting list was so
long we were told it would be 2 years before the process began and probably 3
years until we got a diagnosis. This is DISGUSTING we were all struggling as a
family and needed access to support which just wasn't available. I also feel that
once a child is diagnosed there should be 6-monthly reviews with a paediatric
psychologist/nurse to discuss how things are going and to offer advice going
forward. Presently, our children get diagnosed and we get no support at all
from the NHS. We get peer support from support groups but that is it
Difficult to access without a fight. Nothing to support post-diagnosis of autism,
completely alone
We got a diagnosis with no follow up help/advice. We had to research
everything off our own back - nothing GP or social care led. Nothing but bad
memories come to mind about the whole process of being diagnosed. When
professionals are involved it would have been far easier if they had details of
diagnosis prior to appointments/meetings, rather than me as the parent having
to go over and over the same history with each professional
12
Parents of children and young people with a disability emphasised how important
support groups are to them.
In the pre-engagement with parents attending a PCAN support group, people
commented on the positive nature of the support they received from school, health
professionals, outreach services and community-based services (appendix 1).
Support groups have been invaluable for me as a parent and unfortunately have
been the only way I’ve had access to information and advice
I find support groups invaluable for sharing information and strategies. I find
that in school there is a lack of understanding from teachers about how the
disability affects my child
PCAN/Sprout*– lifelines!
*a gardening club for children and young people with additional needs
My son goes to a social group on a Saturday which is very valuable. It is about
the only thing he wants to leave the house for and gives me the opportunity to
speak to other parents in similar situations
Some parents report having very little support and some say they have been unable
to access support because their child doesn’t meet certain criteria, or doesn’t have
a ‘severe’ disability and they describe the impact this has had on their lives.
Pre-engagement with parents who attend a PCAN support group also highlighted a
lack of information and a feeling of not knowing who to go to for advice and support
(appendix 1).
I have not received any of the above mentioned support. If it is available then
I would like to be able to access it.
Respite is very important but never had it. Would all be very important but
none exist.
At the moment your child needs to be extremely disabled to get anything. If
they are only moderate or slightly then the services just say she doesn’t meet
the criteria, go away
There is a large gap in accessing support for children with mild to moderate
difficulties – the focus seems to be on the severe disabilities – others often don’t
fit the criteria for support and this can lead to the parent and child in crisis
13
Support for the family is vital. My daughter has a role in caring for her disabled
brother and she receives very little support. She was turned down from ‘young
carers’ and yet she needs support to help her understand her brother’s
behaviour – to be with other siblings going through a similar experience
We get our support from groups which are run by charities, I have not found any
support offered by the council
You [Kirklees Council] are failing to fund vital places of support like Sprout. If
Sprout goes I will have nothing to help get through the weekend. It’s disgusting
that you are turning your back on Sprout when it helps so many families and
has stopped my child being put into care. Kirklees provides nothing for my child
with an autism diagnosis
We really need activities in the rural areas of Huddersfield – both on weekends
and during the school holidays….to include kids with milder needs too, who may
not be obviously disabled
This survey is presented in a way which suggests services and support are
available to parents but this is just not the case. It’s insulting to be asked how
important these things are to us when we don’t get any of this support (PCAN
group)
14
People were asked about the type of support they would like to see in Kirklees:
Parents and carers came up with the following ideas for new approaches, facilities
and support they would like to see in Kirklees:
A purpose built disability information centre and training for staff under one
roof would be wonderful
Parents and consultants should be made aware of NHS funding and other funding
streams. Often the consultant or GP cannot fully help a carer because they are
not informed of current changes or opportunities of help that the patient and
carer could access
More support for parents with learning difficulties who can’t research or
understand their child’s conditions
More support for families and siblings
I think the support provided by the Surestart centres need to be a lot more
specialised. It is demeaning to be sent on a very basic ‘household’ skills course
0
5
10
15
20
25
30
35
40
45
50
....other supportservices youfeel we havemissed which
are important toyou/your
disabled child?
....new types ofcare andsupport
services youwould like to
see develop inKirklees?
....other supportthe council
could provide tohelp parents
come togetherand supporteach other?
....other supportthe council
could provide tolocal
communities tohelp
communitiescome together
to developcommunity
supportsolutions?
Re
sp
on
se
Co
un
t
Services for disabled children and young people (continued)- Are there:
Yes
No
Don't know
15
or parenting course when wat the parent needs is information on ASD. At times
I have felt like I have done something wrong as a parent when actually I am
doing incredibly well under difficult circumstances
Emergency support in times of crisis for parents and siblings
There needs to be more training courses for parents for how best to deal with
their children’s special needs
Sibling support and family support. Counselling for family and activities
bringing families together like SPROUT. We need more behaviour support,
resilience training for parents. More support for siblings in school and out of
school as their needs not always met
Tourette’s support groups
More availability of respite. More availability of holiday clubs
Help from social services as there are no clear ways of accessing the support
you may need. We have relied on our own family for this as we don’t know how
to access respite
Pre-engagement with a PCAN support group (appendix 1) found that parents would
welcome a single point of contact to help navigate, inform and advise. A comment
was received in this engagement to suggest a single point of contact would be useful
to peple.
A single point of contact would help. Not different people in education, social
services, NHS or day placement, eg an allocated liaison worker
16
Having services and communities which are as inclusive as possible
Where inclusivity is concerned, a large majority of people felt all the statements
were either ‘very important’ or ‘important’.
People want information to be accessible, whether that’s having information readily
available in places where people regularly go for support or having information in a
format or language which is understandable to them. People who don’t speak
English or don’t have English as their first language clearly find this to be a barrier
when accessing services and support.
Easy to read info – I can’t read so important
Large print and braille not immediately available
The height of signage plus the distance away can make them painful and hard
to read at times
Lots of services are moving from Batley to Dewsbury and then from Dewsbury
to Huddersfield. We need more services closer to home
0
20
40
60
80
100
120
Ch
oic
e o
f p
lace
s t
o g
o in
th
eco
mm
un
ity w
hic
h a
re a
va
ilab
leto
eve
ryo
ne
, n
ot
just
tho
se
with
a d
isa
bili
ty
Ea
sy t
o r
ea
d in
form
atio
n/s
ign
s
Acce
ssib
le b
uild
ing
s
He
lp w
ith
dis
cri
min
atio
n o
rb
ully
ing
Re
sp
on
se
Co
un
t
Not at all important
Not very important
Neither important or notimportant
Important
Very important
Don't know/not relevant to me
All people with a disability should have opportunity to be fully included in all parts of the community.
This should be the case however old you are, and whatever your disability might be.
Thinking about your own experience, please rate how important each care/support service is to you
or the person you care for:
17
Important for people in wheelchairs to get in to buildings
Would love local services to embrace social media more
Being allowed and able to go to “normal” people’s groups
Everywhere being accessible, ie ramps that can be pulled out
Online support is of no use to us. Everything is being moved over to online
service but that is no good to us (Milen Care – women’s group)
Someone from Gateway to Care should come to places like Pakistani Association
to explain what they do, what’s available. They should publicise their services
more (Pakistani Association, Huddersfield)
I wouldn’t use Gateway to care due to language barrier, no transport, not seen
as a local service (Milen Care – men’s group)
Gateway to Care is no good to us. You cannot get through on the phone and
when you do they don’t have anyone that can speak our language (Milen –
women’s group)
Language and transport is a barrier to accessing services and feeling inclusive
(Milen – women’s group)
Important to have access to self-care advice and information – but it should be
accessible to people like us who don’t communicate in English (Milen – women’s
group)
Carers who don’t speak English don’t feel comfortable going to the main groups
as they don’t feel like they fit in or feel comfortable in groups (Milen – women’s
group)
Accessible buildings are very important. Services need to be central, in town
so that people can get to them without crossing busy road (Blind and Low Vision
group)
Many elderly, disabled people are deaf or hard of hearing and struggle with any
phone conversations (Milen – men’s group)
People talked about how they wanted others to have a better awareness of disability
to help alleviate misconceptions and improve understanding of some of the issues
18
faced by people with a disability. Some people described how they have
experienced discrimination or bullying because they have a disability.
Lack of understanding was also a theme in the ‘welcome to my world: issues
affecting people in Kirklees who are Deaf or hard of hearing’ report (pre-
engagement, appendix 1) where people described experiencing lack of patience,
rudeness and poor customer service from receptionists.
Perceptions of people with autism are improving. Perhaps better education
about disabilities should start in schools at a young age
People in the community are uninformed about disability. If the disability is
obvious (eg Down’s syndrome or use a wheelchair) there is usually support.
However, if someone has a ‘hidden’ disability such as autism there is little
awareness or support
Inclusion is extremely, extremely important because having more inclusive
communities in Kirklees become as a result of disabled people integrating more
by participating in activities that people without disabilities participate in will
reduce isolation and loneliness of disabled people. Integration will allow both
disabled and non-disabled people to develop friendships
My child has been a target of hate crime in my community. My child is bullied
for being autistic whilst in school. Families with hidden disabilities are failed
by Kirklees
Used to live in a home and got bullied…I’m happy where I am now
19
Developing and maintaining people’s independence
All the statements around maintaining or developing independence were ‘very
important’ or ‘important’ to people. The thing which people either didn’t know
about or didn’t feel was relevant to them was ‘access to assisted living devices’.
One person described how they felt unsupported since becoming registered blind:
Feel let down on so many of these points. I was registered blind at 31. Luckily I
am a pro-active person because I have been left to get on with it. Visual
impairment affects every aspect of my life yet the only assistive aid I received
was a guide cane. I have to buy others myself but these are always a lot more
expensive than normal versions. I have also had to teach myself Braille and
how to use assistive technology. Local blind centre in Batley does not cater for
people of working age
0
10
20
30
40
50
60
70
80
90
100
Ha
vin
g a
ch
oic
e o
f w
he
re a
nd
ho
w t
oliv
e
Su
pp
ort
/so
cia
l g
rou
ps in
th
eco
mm
un
ity
Op
po
rtu
nity t
o f
ollo
w y
ou
r in
tere
sts
Pe
rso
n-c
en
tre
d p
lan
nin
g (
wh
ere
yo
ur
ne
ed
s,
wis
he
s,
str
en
gth
s,
go
als
are
ce
ntr
al to
an
y p
lan
s b
ein
g m
ad
e)
Acce
ssib
le t
ran
sp
ort
Acce
ss t
o a
ssis
ted
liv
ing
de
vic
es
Re
sp
on
se
Co
un
t
People with a disability should be supported to live independently with their family and friends, where possible. Thinking about your own
experience, please rate how important each care/support service is to you or the person you care for:
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
20
Having accessible transport is important to people so that they can remain
independent. However, some people with a disability said that public transport
services are often difficult to use and this presents an inequality of service for this
group of people.
[I would like] disabled taxis available on a Sunday and Information on the
criteria for the access bus. Don’t agree with how wheelchair taxis charge more
for same journey as someone not using wheelchair taxi
There are not enough bus services in Kirklees. Transport is no longer accessible.
I have to walk half a mile to get to the bus stop
Without accessible transport, many opportunities can’t be accessed
My nearest bus stop is half a mile away. As a disabled person I cannot walk
that far
Being able to have 1/3 off all travel rather than free so I can pay too
Some buses are not accessible (Blind and Low Vision Group)
Some people have to pay for a bus into town and then catch another bus out of
town so that they can get to the services they need….sometimes have to allow
1 hour travel time to get there (Blind and Low Vision Group)
Nobody uses access bus – didn’t know about it (Pakistani Association)
Use access bus to get to places. If it didn’t exist I would have to rely on my
mum as I can’t drive and can’t manage to use buses or taxis. I have to work
round the times that the access bus can pick up or drop off (Howland Centre)
People described the adaptations which they rely on for daily living and some people
detail the difficulties they have experienced in accessing the equipment they need.
It has taken 3 years to get a downstairs toilet and adaptations for a lift
I am disabled due to deafness/hearing loss and am dependent on certain devices
to help with living independently, eg a special highly amplified telephone; a
smoke alarm with separate flashing light device and vibrating pad for under
pillow to alert me in case of smoke/fire in house
Very hard to get adaptations, always told there are no resources, no funds
available (Pakistani Association)
21
Some people report feeling let down by professionals not having enough knowledge
about what’s available, unavailability of groups and facing a struggle to get
information about what’s available to people with a disability.
Children and young people have to make do with social workers with little or
no knowledge of what support mechanisms are available to support daily living
and independence in the home or out in the community
There are not enough social groups in the community. There is no person
centred planning
I do not see how help from the community would come about. It would be nice
but it’s unreal
My child has not received any of the above support. He does not have access to
any social services support. He is wasting his life away. There is no planning
for my child's need, I don't even know what support my child needs or what he
is entitled too. My son has no opportunities to follow his goals. He wants to
play football but nobody can tell me where I can send him to play with the right
support
One person was resigned to the fact that they would never be independent because
of their disability.
My learning disability is such that I will never be independent. What is more
important to me is having a small network of carers to spend time with me.
Longer term I will need a comfortable, secure place to live as my parents will
not be able to care for me at home indefinitely
In the council’s budget consultation (pre-engagement, Appendix 1) people want to
see the council maximising disabled people’s independence by helping them do more
for themselves. Some people within this engagement expressed concern about not
feeling ready to take steps towards independence.
I don’t want people to push or pressure me to be more independent because I
don’t like it. I’m OK as I am. I will ask if I want to be more independent
Not sure why the council think that everyone wants to live in supported
accommodation. Lots of families I know would much prefer their son or
daughter to live in a residential small home (4/5 people) just as a family would
22
Enabling everyone to making a contribution to society, where this is
possible
The most important things for people in terms of making a contribution are:
Opportunity to have your voice heard
Support with employment
Support to attend an education setting
Some people talked positively about the groups they go to, the volunteering and
employment opportunities they are involved with, and the way they feel their voice
is heard. Most people emphasised that effective support is essential to enable them
to make a contribution in these ways.
Without the support of the REAL employment service [Realistic Employment for
Adults with Learning Disabilities] and I would feel vulnerable and that no-one
would understand what I needed. REAL have helped with my confidence and
0
10
20
30
40
50
60
70
80
90
100
Su
pp
ort
with
em
plo
ym
en
t
Su
pp
ort
with
vo
lun
tee
rin
g
Su
pp
ort
to
att
en
d a
n e
du
ca
tio
na
lse
ttin
g
Op
po
rtu
nity t
o s
up
po
rt o
the
rs w
ith
a d
isa
bili
ty (
eg
th
rou
gh
be
frie
nd
ing
)
Op
po
rtu
nity t
o b
eco
me
an
ad
vo
ca
te
Op
po
rtu
nity t
o h
ave
yo
ur
vo
ice
he
ard
Re
sp
on
se
Co
un
t
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
People with a disability have the right to contribute to society, freely and equally. Each person has
something to offer; through paid work, volunteering, peer support or by simply having opportunity to
voice their opinion.
Thinking about your own situation, please rate how important each care/support service is to you or
the person you care for:
23
have organised many activities for me to do to help me feel included and have
something meaningful to do and given me the opportunity to build my skills
while I look for work
At present I can still be involved with volunteering but the need to pace myself
is not always understood by others
Keep important support services available including employment support
services….I have a learning disability and without REAL employment my life
would have been different. They have helped me with training, development,
skills and my general wellbeing. Without this service I would have done nothing.
Support to help disabled people in employment is the responsibility of their
employers. If disabled people want support with applying for jobs or upskilling,
they should receive it the same way as everybody else
People who live rurally or can’t afford transport need help to participate and
attend. Befriending is a great idea and will help families
I go to Ponderosa 3 days a week, doing gardening activities. This helps to keep
my hands mobile and I meet with friends. I go to Howland Centre once a week
and do art activities. Then I work, supported by REAL employment. These are
the services that are important to me. I would love to go to college but I had a
nasty experience there. If I don’t like a service I would tell them. When I had
a problem at college I felt they listened to me when I told them about it
(Howland Centre)
People would be happy to make a contribution by working or volunteering, if
their health was OK. Lots of people help in mosque. People here appreciate
the opportunity to give their feedback on different services (Milen Care – men’s
group)
Any additional support with life and social skills, clubs to help form friendships.
Groups like this in Huddersfield give opportunity to meet friends, socialise and
opportunity to exercise (Blind and Low Vision Group)
Other people described feeling let down by a lack of support or the way that they
feel their disability means they are unable to work, volunteer or make any sort of
contribution.
The support from Kirklees up to my child leaving junior school was
fantastic….good few years at special school until college was a place to go. She
didn’t really learn anything and then felt even more let down when thrown into
the outside world. Job prospects are slim and volunteering not always suitable.
24
After all the hard work people put into supporting my daughter, her skills and
abilities are not being used. All she wants to do is what her peers do – go to
uni, work, leave home, get married
I have no speech and severe learning difficulties. I will never be able to work
or volunteer. The concept of “making a contribution” unfortunately means
nothing to me
My son has no access to support with education, support to attend educational
settings, support to have voice heard. None of the above is available
Currently I am not allowed to make a contribution because I need “Easy Read”
and people assume that if you need “Easy Read” you are a drain on society and
cannot contribute anything
I want a personal assistant to support me to work/volunteer because I want to
be a part of society and pay my own way and not get everything free
Some organisations put barriers in the way so that people with visual
impairments cannot become employed or volunteer. Organisations need to be
encouraged to think outside the box and find alternative roles for visually
impaired people
[Need] opportunities for young disabled people to live and work in their
communities in as independent a way as possible and educational opportunities
for them to learn the life skills necessary are therefore essential
We need support to have a voice. It’s difficult when you are not fluent in English
(Pakistani Association)
I fear my children will grow up with minimal support when finding a job, making
friends and having their voice heard
25
Giving people choice and control over their care and support
All the options to this question have been rated ‘very important’ or important’ by
people responding, with people rating ‘being able to choose which staff will support
you’ as slightly less important to them.
Being fully involved in decisions about care and support is clearly very important to
people. They want to feel in control and empowered to make choices about
important issues which will affect their life, or the life of the person they care for.
Some people feel they have been excluded from discussions with professionals.
Should be your choice, your decision. Don’t want to be made to go somewhere
if I don’t get on with staff
Full involvement in all care is vital for person-centred planning
Actually being allowed choice. Actually being allowed control. I am fed up of
being given money to spend on my care then being given a legal document in
0
10
20
30
40
50
60
70
80
90
100
Be
ing
in
vo
lve
d in
de
cis
ion
s a
bo
ut
me
dic
al ca
re
Be
ing
in
vo
lve
d in
de
cis
ion
s a
bo
ut
pe
rso
na
l ca
re
Be
ing
in
vo
lve
d in
de
cis
ion
s a
bo
ut
so
cia
l ca
re (
eg
wh
ich
da
y c
en
tre
to a
tte
nd
)
Be
ing
ab
le t
o c
ho
ose
wh
ich
sta
ffw
ill s
up
po
rt y
ou
Be
ing
in
vo
lve
d in
de
cis
ion
s a
bo
ut
dir
ect
pa
ym
en
ts/p
ers
on
al b
ud
ge
t
Re
sp
on
se
Co
un
t
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
People with a disability and their families should be involved in decisions about how their needs are
met and the care that they receive.
Thinking about your own experience, please rate how important each care/support service is to you
or the person you care for:
26
complex language. So I end up with loads of money as I was not helped to
know my choices. Then other people decide for me when I was never given a
chance
Everyone with a disability should be able to reach their full potential and live
as full a life as possible. The service should focus on what they CAN do, rather
than what they can’t, and they should have as full a say as possible in what the
system provides them with
I would like to be there when they interview new members of staff. I would like
to help and choose the staff who are working with me
After asking for support with my son, an assessment was completed with what
the assessor thought the needs were (sitting service) rather than what I knew
the family needed (taking our son out and giving the family a break)
I don’t feel involved in decisions sometimes. Discussions are focused on medical
issues. GP’s often don’t know enough about the support that’s available to
people in the community, so they’re unable to make informed decisions about
care packages (Blind & Low Vision Group)
I feel all my needs and wishes are taken into consideration when planning my
care. Some people talk over me though, especially at home when people come
to see me. They talk to my parents rather than to me and I have to say “excuse
me, I’m here” (Howlands Centre)
27
Enabling people to be as healthy as possible
People feel most services which support people to stay healthy are ‘important’ or
‘very important’. The most important things are:
Access to a GP
Access to a dentist
Access to specialist health services
Comments were made about some of the issues and barriers people face when
attempting to access health-related services.
Often elderly people would love to have access to more sport services but are
too embarrassed to say that they need a carer to help with dressing or
undressing. More elderly people would access sport if they had simple help like
this
GP’s should highlight all carers young and old who attend their practice
There is a problem with finding an NHS dentist in Kirklees
0
10
20
30
40
50
60
70
80
90
100
Acce
ss t
o a
GP
An
nu
al h
ea
lth
ch
ecks
Info
rma
tio
n a
nd
ad
vic
e o
nh
ow
to
se
lf c
are
if
yo
u…
Acce
ss t
o a
de
ntist
Acce
ss t
o h
ea
lth
an
d f
itn
ess
gro
up
s
Acce
ss t
o s
pe
cia
list
he
alth
se
rvic
es
Su
pp
ort
fro
m h
ea
lth
tra
ine
rs
Re
sp
on
se
Co
un
t
People with a disability and their families should be able to stay ashealthy as possible. Thinking about your own experience, please ratehow important each care/support service is to you or ther person youcare for:
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
28
I have not had any support for access to specialist services
GP doesn’t do anything to make it easier. No flexibility. No continuity of GPs
– always different….son needs to be familiarised
The dentist at Princess Royal is excellent. We need help with taking out son to
the GP as many times the GP cannot get near to our son to examine him
As a child I had lots of support, co-ordinated through school (Castle Hil special
school). As an adult, there is nothing done automatically. Everything seems to
take an age, eg getting a new pair of shoes (necessary because I have abnormal
feet) took over 6 months. I used to receive specialist dental care as I have
abnormal gums and teeth – again, this has stopped
I have a rare condition so generalised services often cannot offer support
beyond my own knowledge of the condition. It would be great if there was
someone somewhere who supported the less regular LTC's of asthma, diabetes,
cardiac issues etc
Annual health checks and health trainers should not be imposed on people, but
they should be available to whom so ever shall want them. It is important that
people can care for themselves, but it is also important that they are able to
access help from others if the help of others. Self-care should not be used as a
way of replacing effective care methods that involve other people. Fitness
group and health training providers should not receive funding from Kirklees
Council if they will not employ people to support disabled people who wish to
access them
My daughter’s GP was very unsupportive and we had to fight for everything.
He clearly had no knowledge of her condition and as he was unable to refer her
to a specialist service it was very difficult. He clearly thought it was all in her
mind
The dentist is always full and to get a GP appointment is impossible (Milen Care
– Women)
Self-care information should be in community centres, not online (Milen Care –
Women)
Accessing GP’s can be a problem. Difficult to get appointments, have to wait 1
week sometimes. My GP says I’ve got to allow 3 days for a prescription; in the
meantime I have to buy the medication from the pharmacy because I couldn’t
get the prescription from the GP when I needed it (Milen Care – Men)
29
Some people said they were happy with the support they receive which helps them
to stay healthy.
Through Real employment I was supported to join a group of people to go along
to disability sports, I now attend every week to keep me fit
This does work, I am happy to say. Thank you to all involved
Current dentist, GP and hospital services for people with special needs are very
good – nothing should be done to reduce the current service
30
Planning for the future, including smooth and seamless transition
between services
It appears that having the right support when planning for the future is important
for people at every stage mentioned in the survey. People feel the 3 most important
times to receive support are:
When changing schools or other educational setting
When changes to family or carer circumstances mean being cared for by
someone new
When changing from specialist support in children and young people’s services
to adult services
The thing which most people feel is either not relevant to them or they don’t know
about is how important it is to have support when moving home, both within and
outside of Kirklees.
0
10
20
30
40
50
60
70
80
90
100
Wh
en
ch
an
gin
g s
ch
oo
ls o
r o
the
re
du
ca
tio
na
l se
ttin
g
Wh
en
ch
an
gin
g f
rom
sp
ecia
list
su
pp
ort
in
ch
ildre
n a
nd
yo
un
gp
eo
ple
's s
erv
ice
s t
o a
du
lt s
erv
ice
s
Wh
en
mo
vin
g h
om
e w
ith
in K
irkle
es
Wh
en
mo
vin
g h
om
e,
fro
m o
ne
lo
ca
la
uth
ori
ty t
o a
no
the
r
Wh
en
ch
an
ge
s t
o f
am
ily o
r ca
rer
cir
cu
msta
nce
s m
ea
n b
ein
g c
are
d f
or
by s
om
eo
ne
ne
w
Re
sp
on
se
Co
un
t
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
People should not be passed to another service at a certain age, or at a certain time in their lives, in
a way which causes problems for them.
Thinking about your own experience, please rate how important it was/is for you or the person you
care for to have support at the following times:
31
People expressed concern about what might happen to them or the person they care
for once their long term care arrangements have to change, and some described how
they would want to make plans for this:
There will come a time when us parents can't support our son. It’s quite
frightening. Don't know what will happen. He hasn't got EHC plan yet. He's in
3rd year at college but I'm not sure how long he can continue going to college
for
I worry massively about how my children will cope as adults and who they would
be cared by if anything was to happen to me
The most worrying thing for most parents is ensuring that their children will
continue to have happy, productive lives when they grow up
I want some information when I'm ready to move out, about different places
that I could live. And maybe to look around the different places. I live with
family now
If only I could live independently…I know I’ll have to one day, I will have to move
out. Mum and dad aren’t getting any younger. We have been thinking of
perhaps getting a group of me and 5 friends and renting a house. (Howlands
Centre)
People shared mostly negative experiences and concerns regarding transition
between different services:
Changing schools is extremely difficult, we have wanted to change schools for
over a year now but are being ignored
My daughter has learning difficulties and turns 18 in 2 months. She doesn't
understand why her respite play scheme out of school clubs finishes. How do
you explain to an autistic person that you are now an adult
People want to have a seamless approach when planning for the future, eg
moving home. They are concerned that relevant information might not be
passed on to staff/organisations involved (Milen Care, men’s group)
Support was lacking at transition to adult services and should be ongoing
I have already made the transition from school to day centres. The next big
move will be when my parents can no longer care for me at home. So far there
32
has been very little support, because there is no money to support families like
mine. My parents are seen to “cope”. I have been given an extra 6 days respite
per year, bringing the total to 30. This is very welcome, but my parents foresee
a big challenge in getting social services to support my move to residential care
Moving from childhood to adulthood was the most scary and difficult transition.
Hope this makes it easier in the future
There should be more support and guidance in the transition from child to adult
services with respect to ongoing health and wellbeing
No support from age 16-18…He didn't want to leave school and it was a very
difficult time, a difficult process which meant lots of issues came out for him
My son became an adult in terms of education, his benefits and health but not
in terms of social services where the age is 18. Why?????
One person commented that their experience of transition had been a positive one:
The transition from mainstream to specialist provision was handled sensitively
and smoothly for our son
33
Having a ‘whole family’, lifelong approach to care and support
The responses to this question suggest that support, respite and training for carers
and families are all ‘very important’ or ‘important’ to people. Respite for
carers/families was rated as slightly less important or people didn’t know about
this/it wasn’t relevant to them.
Some people are concerned about the lack of support for siblings of children who
have a disability.
There’s nothing for siblings of children with a disability. There’s nothing for
young carers over the age of 8 but lots for carers of adults (PCAN group)
Could we set up a ‘SIBS’ group? The services provided to care for my son are
excellent…and they do offer some respite to give us times as a family to draw
breath, spend time with our daughter. However, I wish that these services were
more flexible so that we could visit relatives (my mum and dad etc) more easily
Overwhelmingly, people wanted carers to be adequately supported in their caring
role; having access to support groups and training and having respite which is flexible
and responsive are all highlighted as being important.
0
10
20
30
40
50
60
70
80
90
100
Respite forcarers/families
Training forcarers/families
Support groupsfor
carers/families
Re
sp
on
se
Co
un
t
Not at all important
Not very important
Neither important or not important
Important
Very important
Don't know/not relevant to me
Families and carers often play a very important role in supporting people with a disability. It’s
important that carers and families can access help and support to help them look after their loved
ones.
Thinking about your own experience, please rate how important each care/support service is to you
or the person you care for:
34
Important for carers to have a break. Lots of carers are old. People go to
Cherry Trees to give carers respite. Needs to be flexible support for carers, to
respond to crisis. If people can get respite and stay over then it gives that
person time away from their family too, chance to develop independence
Support for carers is very important, they need to have a break. Places like
Waverley in Huddersfield really help (Pakistani Association)
It’s important that the needs and requirements of the carer are considered in
any decisions…If the carer is unsupported themselves, this can have a knock on
effect on the person that they are caring or. The carer has to be fit, well and
content in their own pattern of life if they have any chance of looking after
someone else in an effective and positive way. The carer’s wellbeing plays THE
key factor when they are involved in looking after someone else’s life
People here want to see carers have respite but they are unaware of carers
accessing suport groups (Milen Care – men’s group)
Often carers can feel lonely and isolated and it is important that they receive
relevant information at the time of need, not by chance
My daughter receives money to enable her to go to Waves in Slaithwaite and
has a personal assistant so I can go to work
Carers often spend their own care time meeting social workers etc in order to
get the best for the person that they support. Please be considerate of the
commitment and the time this takes and do not push too much responsibility
onto the carer. Often they feel that their home isn’t their own and strain can
be put on marriage and when we became carers we didn’t want to sign up to be
the hirer and firer of staff etc
What carers support?! I’m on my own here and once my mother has passed, I
will be moving to central Europe as it scares me to think I will grow old in
Kirklees
Relatives of carers for the disabled should be encouraged to provide respite
support so it is kept within the family rather than institutionalised
My interests as a parent are non-existent. There is no time or support to pursue
my own interests
Respite is difficult due to lack of trained carers. Training for us as
carers/family has been non-existent. We’ve had to train ourselves. Support
groups have been the most helpful in this whole journey
35
One comment suggested that carers get too much support:
Kirklees Council spend too much on carers and not enough on actual disabled
person. Tonnes of carers groups for only carers! Uneven balance!
Findings from easy read surveys
There were very few responses to suggest people felt any of the things shown on the
survey were unimportant, other than the section regarding ‘being able to make a
contribution’. Almost half of all respondents said support with employment,
volunteering or to attend an education setting was not important to them; all of the
respondents said that having their voice heard was important.
Comments from the easy read surveys have been included in the main findings
above.
Other comments from all feedback obtained
Some comments suggested people felt that positive changes and improvements
would come from having integrated disability services for children, young people
and adults, particularly where transition is concerned.
Yes - more joined up thinking, smoother transitions from child to adult services
No transitions
No chance of being lost in the system
Working with same person
Overall brilliant idea, looking forward to it happening
I would be very happy if you gave parents the chance to be part of a forum in
shaping the future of the All Age Disability Service in Kirklees – maybe if you
advertised this to parents too, you could get some on board
It will make it much easier as children leave school and respite, to move on
In theory it should run more smoothly and there will be continued support with
one service
Better transition on leaving school
The idea that there is an all age service is fantastic as the need to move from
a care team which works, at times of life transitions, adds stress to both the
36
individual, their family and carers. It also often wastes valuable previous input
in terms of health and self care
Some people expressed concerns about what an All Age Disability Service might
mean:
That the focus would be all on carer; disabled person forgotten
Disabled person not allowed a voice. Carer more important than disabled
person. This is bad! Disabled people are getting forgotten!!
If adults and children’s services are joined together, how do we know which
services will be affected? Either the children will miss out on vital support or
the adults will (Milen Care – women’s group)
There needs to be a clear understanding of the different needs of different
groups of people that you’re integrating services for
Concerned that people will lose specialised services. Elderly are not seen as a
priority and more investment might go to children’s services and get taken
away from services for older people. They need to realise that one service
doesn’t fit all. You can’t make one big service to meet the needs of everyone
(Pakistani Association)
Innovation does not always mean we are moving ahead. So don’t change things
which patient/carers are happy with, ie don’t change for the sake of changing.
Sometimes change in itself can cause distress to older people
I don’t know what is envisaged but fear that this change will be used to cover
up the current inefficiency of the services and delay improvements as “we are
going to make a major change and put all our energies into that”. Current
services would be fine if services follow all the wonderful visions, objectives
and procedures that currently exist and keep being re-invented. Policy makers
and senior managers need to put their attentions to what goes on at the sharp
end and not just keep re-inventing the wheel. I fear that whatever shape the
new services take we will be in the same position if we keep concentrating on
the top level and not what happens in practice
I do believe the council is too involved in many areas as people like it that way
and have got used to it but with things having to change, my preference would
still be able to access a skeleton service from the Local Authority than rely on
community assistance which may be non-existent
37
There was concern from some people that if the council decide to create an All Age
Disability Service then the decision to do so will be very much influenced by the
financial pressures faced by the council. People don’t want to lose services as a
result of the integration of disability services:
It’s just another cost-cutting exercise (PCAN group)
They can join the services as long as no cuts to budgets are made. We don’t
want any services to be cut (Milen Care – women’s group)
You joining services together will end up with children’s funding being even
less. Disgusting to save money in disguise!
An All Age Disability Service sounds good in theory. However, in practise my
concern is that it is merely a cost-cutting exercise
Concern would be cost-cutting exercise and would lose what little we get now.
Interested in idea of integrated approach but not to detriment of children's
services which are poor, particularly mental health and disability services.
Open to explore possibilities
You don’t have enough funding to support children properly, adults get even
less, so combining the two will mean children suffer. You save millions by using
parents who struggle and often have their lives ruined by lack of support and
money to have time to get out of the house. Further cuts will make those most
vulnerable suffer
Adequate funding needs to be provided so that the quality of service in
education and health improve and ease/lower the stress for parents and
children
This is just a cost-saving exercise! Not focussed on what is best for the client
Do not allow Kirklees Council to shut or restrict respite care at Cherry Trees
There were some comments which suggested that people had misunderstood what
an All Age Disability Service might mean as they expressed concerns about children
and adults services being delivered at the same time, from the same location, with
children and adults having to share the same space when accessing services. During
the formal consultation it will be essential to communicate exactly what having an
All Age Disability Service will mean to people with a disability and their
parents/carers.
38
Adults with disabilities could easily be frustrated by children even if they have
the same disability as them and vice versa
If a service is merged it's important adults and children still have their own
space otherwise it’s just throwing them altogether for the sake of convenience
5. Limitations of the study
This engagement focussed on asking people about the support and services which
are important to them. However, we were also asking people what they thought
about the idea of having an All Age Disability Service in Kirklees. We could only talk
in very general terms about what this change might mean to people; without having
a plan of which services might be affected and how an All Age Disability Service
might impact the support and care people receive, it proved quite difficult to gather
opinion on this as people want to know how any changes might affect them, or the
person they care about. It is hoped that any subsequent formal consultation process
will present specific proposals to people which will help people to understand the
impact the changes might have.
The online survey asked people to rate how important different support and services
are to people and the overwhelming response to the questions was that all things,
in all categories, are important or very important to people. In retrospect, it may
have been more meaningful to ask what works well for people with a disability in
Kirklees and what might need to be improved. However, because people were given
opportunity to add comments in text boxes, this has helped to clarify opinion and
has meant that people have been able to openly express how they feel about some
of the services and support in Kirklees and how they might like things to change or
improve.
The Council asked Healthwatch Kirklees to engage with anyone with a disability or
their parents/carers, but additionally to focus on gathering feedback from black and
minority ethnic (BME) individuals and those who are Deaf or hard of hearing. We
had limited response from individuals who are Deaf or hard of hearing, despite trying
hard to engage with this group through organisations we have worked with in the
past. The Sensory Service created a BSL video to help communicate our message
but there was little or no response to this. We were made aware that the online
survey was far too complex for many people who are Deaf so we promoted the easy
read version and the option for people to e-mail with answers to 3 questions: which
services do you currently access and why are they important to you? Which services
and support work well in Kirklees and what do you think needs to improve? We didn’t
receive any response to this.
39
Unit 11 Empire House,
Wakefield Road,
Dewsbury,
WF12 8DJ
01924 450 379
www.healthwatchkirklees.co.uk
40
Appendix 1
Summary of Pre-engagement
2013-2015
To identify need for inclusive sport provision for people with a disability.
The consultation was Kirklees wide and there were 65 responses.
The findings were:
The main factors which affected provision and participation were:
Age restrictions
Funding stopped
Appropriateness of the session
Date and time of the session
Transport to get to and from activities
Accessibility
Extra support not always guaranteed
Following this consultation there were suggested actions for providers of sport and
physical activities:
To look at what should be considered to provide an ‘ideal’ activity session.
Advice given on how to overcome barriers to participation (as shown above)
To improve marketing to increase awareness of activity sessions.
General Inclusive Sport and Physical Activity Consultation – West Yorkshire Sport
November/December 2013
41
Carers were asked about the kind of things that help to give them a break from
their caring role and what they think are the most important features of a Carers
Break Service.
The results were split down by care categories, making it possible to identify the
results for carers of people with learning disabilities and carers of people with
physical disabilities, sensory impairments and/or long term conditions.
Carers were asked to rate in order of importance the same six key features of a
Carers Break Service and the results were as follows:
Carers of people with learning disabilities
Key feature Importance
Flexible breaks: save up and take
longer breaks
1
Regular set breaks 2
Easy to access 3
Breaks allocated according to need:
waiting times
4
Flexible breaks: book them when you
need them including at short notice
4
Breaks allocated according to need:
amount of breaks
6
Carers of people with physical disabilities, sensory impairments and/or long-
term conditions
Key feature Importance
Regular set breaks 1
Flexible breaks: book them when you
need them including at short notice
2
Flexible breaks: save up and take
longer breaks
3
Carers Consultation Feedback – Kirklees Council
October-December 2013
42
Easy to access 3
Breaks allocated according to need:
waiting times
5
Breaks allocated according to need:
amount of breaks
6
43
Healthwatch held focus groups with 50 people during November 2013 and over 410
people completed an on-line or freepost survey.
Findings:
There are significant communications issues at key stages in the patient
journey for people who are Deaf or hard of hearing. The most significant
theme which ran throughout the survey work and focus groups was the lack
of deaf awareness of people at the GP surgery, hospital or other providers
of NHS services.
The dependency on landline telephone usage, rather than SMS texting, emailing or on-line facilities presents a real challenge for people, particularly younger patients and those with more profound hearing loss. It is important for GP surgeries and hospitals to offer and promote a range of contact methods to patients, to enable them to use their preferred method of communications.
Many of the examples of poor communications, at this stage in the patient journey, appear to come from a lack of understanding and deaf awareness from reception staff, both in person and on the phone. A number of respondents mentioned the lack of patience of reception staff in dealing with them, which can sometimes give rise to rudeness and poor customer service.
The way people with a hearing impairment are treated when they book in and are waiting to be called into their appointment is an indicator of the level of deaf awareness in the GP practice or hospital. It is a potentially stressful situation for patients and whilst there is much evidence of good practice across Kirklees, improvements could be made.
Patients’ records should clearly indicate their communications needs and staff should be shown how to attract the attention of patients without calling their name.
Feedback suggests HRI Audiology clinic should be demonstrating better practice in deaf awareness.
Welcome to My World: Issues affecting people in Kirklees who are Deaf and hard of
hearing as they interact with health services – Healthwatch Kirklees
February 2014
44
Recommendations:
Recommendations Applies to
• Introduction of mobile phone system for SMS texting/email or introduction of internet appointment booking. These should be advertised to all patients so they know that these alternatives exist
• NHS providers
• Deaf awareness training to be developed and rolled out for provider staff (roles and responsibilities including handling phone calls, personal visitors and booking of BSL interpreters)
• NHS providers
• Patient records / computer systems to flag up communication support needs and information used in all direct dealings with that patient
• NHS providers
• Patients to have confirmation of BSL interpreter bookings and names
• NHS providers
• Use of on-line BSL translation services (e.g. SignTranslate) for emergency use in GP practices or hospitals. Low cost system uses a simple webcam to link to qualified BSL interpreters
• NHS providers
• Visual display screens (operating in real time) to call patients in or for people to be approached and personally escorted into appointments
• GP’s and Hospital Trusts
• GP’s to complete Choose and Book with appropriate communications needs / notify BSL interpreter required at hospital appointment
• GP’s and Hospital Trusts
• People to know their rights / policies and practices when it comes to communications support through an awareness raising campaign
• NHS providers
• Recruitment of a Deaf/hard of hearing support person at the hospitals – to help patients and liaise with BSL interpreters
• Hospital Trusts
• Induction loops should be introduced into waiting rooms or consulting rooms that don’t currently have them. These systems should be tested regularly and staff trained on how to use / test them
• NHS providers
• NHS 111 service to make suitable adaptations to the service to ensure it is fully accessible (text or video conference)
• NHS 111
• Awareness raising campaign to be rolled out on 999 emergency service registration system
• NHS providers
• Localised hearing aid after care service to be funded • Health & Wellbeing Board
• CHSWG to report into an appropriate body within the CCG’s or the council’s Physical & Sensory Impairment Partnership Group
• All NHS and Social Care Commissioners
45
• Gain assurance from providers through the Quality Board mechanisms that they have implemented the recommendations of this report within 12months
• All NHS and Social Care Commissioners
• Strengthen the quality schedules of NHS contracts to include the recommendations of this report
• All NHS and Social Care Commissioners
Changes which have been made since this work was completed:
August 2014 - Received formal response to the recommendations from Locala that details initiatives such as staff training and induction loops.
November 2014 - At Deaf and Hard of Hearing Group meeting Mid Yorkshire Trust Head of Audiology outlined some of the work that they do to meet the needs of individuals with hearing impairments
February 2015 - Action on Hearing Loss has been commissioned to deliver a hearing aid aftercare service (Hear to Help), which will provide drop ins for people to get support with using their aids and with any maintenance issues.
46
On 29 September 2015, Parents of Children with Additional Needs (PCAN) held their annual conference. The Chair of PCAN designed a questionnaire which asked parents/carers about their experience of using services for children with a disability. 17 questionnaires were completed and the main themes are shown below.
Parents/carers are sometimes frustrated by the lack of information available to them, often leaving them feeling like they’re on their own, not knowing who to go to for advice and support.
“Land of unknown. Don’t know where to go” “Lost, no help with which way to go” “Felt totally alone and isolated, didn’t know what to expect”
Some parents/carers feel that when they had concerns about their child’s health, development or behaviour their concerns were not taken seriously.
“No one seemed to take as genuine concerns. Felt got a diagnosis only because both have experiences of working with children. Had concerns early on and talked to a lot of people. Very regular – only taken seriously when behaviour issues at school”
“At beginning went to Psychological Services to explain concerns and feel fobbed off… went to right persons and got wrong response – years of problems…. The initial contact is crucial….concern that issues only taken seriously when things go wrong”
Parents/carers have been left for long periods of time without a diagnosis because of lengthy waiting times for CAMHS services.
“Age 4 statement, age 7 then statement at 11, pending EHC progress. Still no diagnosis, now 15, on waiting list for ASD assessment”
Some parent/carers identified a lack of empathy from staff within disability services.
“Some staff desensitised – see it every day – lack empathy”
Parents/carers commented on the positive nature of the support their child received from school, health professionals, outreach services and community-based services
“Ellerslie – brilliant at teaching me and my son”
Engagement with Parents of Children with Addition Needs (PCAN) September 2015
47
“Children’s Centre, Dewsbury hospital. Play sessions (1:1) teaching you how to play with your child. Children’s day nursery ‘bought in’ – had walker – nursery and home. Home visit – Portage really good”
“Communication is brilliant with school. Teachers are more communicative – week end feedback. Fab at school and not as good out”
“Autism outreach worker – saved sanity. Teach for deaf – fantastic support”
“Joining PCAN best thing to give me peace of mind and realise not alone”
Parents would like a single point of contact; a worker who can help parents/carers to navigate through the systems operated by different organisations and who can inform/advise.
48
In December 2015 Kirklees Council concluded their six week public consultation on
your council’s budget for 2016-17. This happened by asking the public to ‘weigh up’
a series of statements, asking them to choose the ones that come closest to their
own opinions. They also asked the public to name the single most important thing
they think the council does. Some of the statements are particularly relevant to
disability services.
In summary:
1410 people took part in the consultation
90% of responses were from residents of Kirklees
The most popular of the 12 options were:
Parents have a clear responsibility for getting their children to school safely
I think the council should help to maximise disabled people's independence
by helping them do more for themselves
I think that the council should use modern technology to deliver services
and reduce costs wherever possible
The least popular of the 12 options were:
The council should provide services that enable children to get to school
safely
I think it's important to meet the needs of disabled people by doing things
for them
Modern technology doesn't really suit me - I need to have other options
available to me
When asked what the most important thing the council does is, the most popular
theme was supporting vulnerable people
Budget Consultation – 26 October-6 December 2015
49
Appendix 2
Distribution list used by Healthwatch Kirklees to disseminate information about
the online survey, easy read survey, workshops and opportunity to meet with
Healthwatch Kirklees in a group or 1:1. The reach was far more extensive than
this as the same information was shared via Kirklees Council staff involved in
supporting this work.
Mencap in Kirklees
Bridgewood Trust
All Special Schools in Kirklees
Parents of Children with Additional Needs (PCAN)
Cloverleaf & Kirklees Involvement Network
Carer’s Count
Kirklees Blind and Low Vision Group
Action on Hearing Loss
Huddersfield Deaf Centre
Milen Day Centre
Crossroads Care in Mid Yorkshire
Kirklees Active Leisure (disability groups)
Huddersfield Down Syndrome Support Group
Autism support groups
Sensory World Play Centre
Options Centre
Kirklees Voice and Influence Team
West Yorkshire Disability Sports
Howlands Centre
Remploy
Sensory Services
Huddersfield Pakistani Association
GP’s
Clinical Commissioning Groups
Integrated Youth Support Services
Ravensthorpe Disability Group
Volunteering Kirklees newsletter
The survey was promoted widely on social media and on the Healthwatch Kirklees
website.
50
Appendix 3
Demographics from online survey only
Are you responding to this survey as: (select all that apply)
Answer Options Response Percent
Response Count
A young carer (8-18 years old) 0.0% 0
A parent/carer of a disabled child or young person 39.8% 35
A parent/carer of an adult 14.8% 13
A disabled person 36.4% 32
A Kirklees resident 43.2% 38
A Kirklees council employee 10.2% 9
answered question 88
skipped question 46
What is the first part of your/their postcode?
Answer Options Response Percent
Response Count
WF12 5.7% 5
WF13 10.2% 9
WF14 2.3% 2
WF15 5.7% 5
WF16 0.0% 0
WF17 6.8% 6
BD11 1.1% 1
BD19 3.4% 3
HD1 3.4% 3
HD2 11.4% 10
HD3 5.7% 5
HD4 8.0% 7
HD5 15.9% 14
HD7 6.8% 6
HD8 5.7% 5
HD9 4.5% 4
Other (please specify) 3.4% 3
answered question 88 skipped question 46
Number Response Date Other (please specify)
Categories
1 Dec 18, 2015 10:31 AM wf5
2 Nov 20, 2015 11:51 AM hd2
3 Nov 18, 2015 3:53 PM YO13
51
Are you/they male or female?
Answer Options Response Percent
Response Count
Male 48.8% 42
Female 46.5% 40
Prefer not to say 4.7% 4
answered question 86
skipped question 48
What age group are you/they in:
Answer Options Response Percent
Response Count
17 or younger 24.1% 21
18-20 3.4% 3
21-29 16.1% 14
30-39 17.2% 15
40-49 14.9% 13
50-59 9.2% 8
60-69 8.0% 7
70-79 1.1% 1
80 or over 1.1% 1
Prefer not to say 4.6% 4
answered question 87
skipped question 47
What is your/their ethnic group?
Answer Options Response Percent
Response Count
White 82.8% 72
Mixed/multiple ethnic groups 3.4% 3
Asian/Asian British 9.2% 8
Black / African / Caribbean / Black British 3.4% 3
Any other ethnic group, please describe 1.1% 1
answered question 87 skipped question 47
How does your/their disability affect you/them? (please select all that apply)
Answer Options Response Percent
Response Count
Communication 42.9% 33
Mobility 36.4% 28
Hearing 9.1% 7
Physical 35.1% 27
Learning 61.0% 47
Visual 20.8% 16
Mental health 33.8% 26
Other (please specify) 20.8% 16
answered question 77
52
skipped question 57
Number Response Date Other (please specify)
Categories
1 Dec 22, 2015 11:16 AM self harm/behaviour
2 Dec 22, 2015 11:04 AM anger issues
3 Dec 20, 2015 8:28 PM My disability is visual but this affects my communication too as miss body language etc, risk of tripping or falling also affects mobility
4 Dec 18, 2015 10:18 AM arthritis
5 Dec 7, 2015 2:59 PM social - my son has dyspraxia and ASD (Aspergers) and is awaiting to see CAMHS
6 Dec 7, 2015 1:58 PM high levels of anxiety and disorganisation
7 Dec 7, 2015 1:34 PM sensory/self-regulation
8 Dec 4, 2015 10:45 AM Behaviour I'll health for carer
9 Dec 3, 2015 10:19 AM Global developmental delay
10 Dec 2, 2015 11:12 AM difficulty with all activities of daily living
11 Nov 26, 2015 12:00 PM STRESS!! Not enough hours in the day!!
12 Nov 23, 2015 10:49 AM N/A
13 Nov 20, 2015 3:36 PM Medically
14 Nov 19, 2015 9:00 AM social
15 Nov 18, 2015 8:05 PM Isolation and lack of friends
16 Nov 18, 2015 4:17 PM Social skills
53
Demongraphics from easy read survey only
Male 9
Female 10
Age
17 or younger 0
18-40 12
41-60 6
61-80 0
81 or older 0
Don’t want to say
Which town do you live in?
Batley 4
Dewsbury 2
Huddersfield 12
How does your disability affect you?
Communication 9
Hearing 1
Learning 15
Mental health 3
Mobility 7
Physical 8
Visual 2
Other 3
54